37. Advocating for Yourself with Aidan Leslie

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00:00 

Jen Milner 

Welcome back to bendy bodies with the hypermobility MD, where we explore the intersection of health and  hypermobility, focusing on dancers and other aesthetic athletes. This is cohost Jennifer Milner here with the  founder of bendy bodies, Dr. Linda Bluestein.  

00:16 

Linda Bluestein 

Our goal is to bring you a state-of-the-art medical information to help you live your best life. Please remember  to always consult with your own healthcare team before making any changes to your routine.  

00:26 

Jen Milner 

Our guest today is retired dancer and bendy bodies’ own EDS wellness ambassador Aidan Leslie. Hello, and  welcome to bendy bodies.

00:48 

Aidan Leslie 

Thank you for having me. I'm so excited to be here. 

00:52 

Jen Milner 

Aden, for those of you who don't know you as our wellness ambassador and don't know your story, could you  tell us a bit about your health journey?  

01:00 

Aidan Leslie 

Of course. I grew up as a dancer first competitive, and then I became a pre-professional ballet dancer. When I  was about 15, I started struggling with gaining muscle and keeping up with the intense cardio required for a lot  of ballet and frequent injuries. It was around that time that I reached out and started working with some other  people in the medical world and I discovered and was diagnosed with Ehlers-Danlos syndrome. When I was 17,  I like to say I hit the EDS wall and everything that could go wrong, went wrong all at once. I started having  more symptoms and really put a full stop on my life, but I am fighting back to take back my life and I am really  excited to go on that journey and see where it takes me. Excellent.  

01:50 

Linda Bluestein 

That's fabulous. At what point did you realize that you were not a typical teen going through a rough patch, but  a person learning how to live with a chronic illness.  

02:00 

Aidan Leslie 

Quite a while it took quite a while for you to figure that out. I was diagnosed with EDS while I was still  dancing, and I was having to work around that if you will, and had to come up with some creative solutions, like  having two water bottles, that I could have one that had electrolytes and everything, but I wasn't really  considering myself to be different than anyone else in the room. It was just some adjustments I had to make, but  after I hit that EDS wall and I started having a really severe and migraine like headache that would not go away  no matter what I did still have it, but this was about probably about six months into having that. I met up with  some of my friends who had danced with, but they'd all kind of gone on in their lives and gone to college or  been working professionally and all that.  

02:51 

Aidan Leslie 

I met up with them and I was listening to them, speak and talk about their lives and realize that were on  completely different planets. Like my problems that I was facing in my daily life were vastly different from  theirs. While we grew up together and were great friends and we still had a really great relationship. I realized  that I was on a different path than them and that was perfectly okay, everyone's on their own path and everyone  finds their own way, but that sometimes it, especially if you have hypermobility, your path might be different to  other people around you.  

03:25 

Jen Milner 

I remember Aidan because you and I worked together regularly. I remember you said that there was a turning  point for you when you stopped trying to think of yourself as, oh, I just need to get through this headache, or I  just need to get through this stomachache and you realized, Hey, wait, I have a chronic illness and I have to live  my life differently. Like it changed the way you live your day-to-day life and the way that you approached your  long-term care. Can you talk about that?  

03:53 

Aidan Leslie 

Absolutely. That was again, after I hit the EDS wall everything kind of trying to change, that was such a big  pivot point for me. For, even for several months after that I was treating, it felt like I was treating symptoms,  something would happen and I try and take care of it. And sometimes that solution works. Sometimes it didn't,  but everything I felt like I was doing was very reactionary. It was, there was a problem and I would try and fix  it. I reached a point probably a year into having really severe EDS symptoms and then kind of getting worse and new ones popping up in the way that hypermobility symptoms love to do. I started realizing I needed to be more  proactive and just addressing problems as they came up was never going to fix the solution. It was never going  to stop the damage the problems were doing to start with.  

04:43 

Aidan Leslie 

I, that was that about, probably about a year into really having to deal with symptoms on a daily basis that I  realized I need to start treating myself proactively and try and minimize as much as I can and take care of  myself. Not as someone like, oh, I have this headache once, like he said, but it's not a come and go headache.  This is, this is you're in it for the long haul. It's a marathon, not a sprint. You got to kind of work with that and  think about it in that way.  

05:12 

Jen Milner 

I know that you have been in and out of so many clinics and hospitals for acute things and chronic things. What  has your experience been like dealing with the medical world, both as someone who started this journey as a  minor, right. Also as someone who has a largely invisible illness? 

05:32 

Aidan Leslie 

It's definitely been an adventure. I really first started seeing doctors and trying to work around my symptoms as  they were getting worse when I was about 17. In my experience in the beginning, they were all really fantastic. They'll really try to help me figure out what's wrong and tried some great approaches and different things. After  a couple of years of trying new things and not a whole lot getting better, I think they the doctors that I was  seeing ran out of treatments for me, they didn't quite know what to do with me. I, a lot of my symptoms, because  it was invisible illness, you couldn't necessarily measure it. It's very hard to figure out a way to quantify and  measure a headache if you're not the one experiencing it. It's really hard to quantify and measure fatigue if  you're not the one experiencing it.  

06:23 

Aidan Leslie 

I think it was really hard, a bit of a communication issue. Because it's so hard to get an express what you're  feeling in a way that's makes sense from a doctor side in the same way that sometimes doctors saying  everything, right, it's hard from a patient side to hear it and everything like that. It was a bit tricky for the first  several years until I found doctors, I was comfortable with who we spoke the same language, but there were,  there was definitely some hiccups on the road because it was hard to go in and say, I'm having this problem. I  remember I had, when I was about 18 in the it was around Christmas time, I started having really severe  stomach problems and I dropped about 15 pounds in one month. I went to the doctor because that's not good. I  went to the doctor and I was like, Hey, I'm nauseous all the time.  

07:20 

Aidan Leslie 

I dropped this much weight so quickly, like, something's wrong, can you please help me? It was because the  doctor wasn't in my body and they weren't seeing me every single day. They had no idea what was happening.  They didn't know either. It was a really tricky and Nope, no one really knew what to do. I luckily had seen a  YouTuber on named life with stripes on YouTube. She had very similar symptoms that I did. She was talking  about how she had gastroparesis. This is back before I think EDS really became as talked about as is now  luckily, but it was there wasn't a whole lot as much. No one was really talking about it. And I saw her talk about  it. And I did my research. I went on to the Mayo clinic website. I looked at studies about EDS and about gastro paresis. I went into my doctor and I said, is there any credibility here?  

08:15 

Aidan Leslie 

Like, is this possible? My doctor said, no, there's no reason for you to have that. It was heavily implied with this  particular doctor that he thought it was an eating disorder and threatened to put me on a feeding tube unless I  started gaining the weight back and I was not productive to me. I went into a spiral during that appointment  around it, like, am I crazy? Like, am I doing this to myself? Like, is there not actually something wrong? But I  looked at it objectively. I, I started to pull back and I said, okay, I am not doing this. Like, this is not in my head.  You don't drop 15 pounds in four weeks about nothing like this. This was serious, something was wrong. I did more research and I went back and I said, can we please just do the test? I did not go in and saying, here's my  Facebook comment.  

09:11 

Aidan Leslie 

Hey, sometime my dog walkers, third cousins, girlfriend thought I could have this, I went in with credible  research and I said, can we please just try this test after nothing else was working? Lo and behold, they did the  test and it came back that I had gastroparesis. There's definitely been a lot of walking that line between  respecting doctors, because they do know the human body, they went to medical school, they know more about  the human body than I do, but also respecting myself because I know more about my body than the doctor I'm  talking to does. It's been a lot of that walking that line between respecting and also advocating for myself,  

09:53 

Jen Milner 

That is a fine line to walk. And, and it is something that you have been looking at and practicing now for a while  and growing into the point that you've reached at it. So, so what have you learned about interacting with medical  professionals throughout all of this and what tips might you offer other people dealing with bewildering array of  issues to address?  

10:19 

Aidan Leslie 

Absolutely. The little drawings are really good word for it. Like I was saying, definitely you do your research  and make sure it's credible resources. It, you use a study go in and, but don't go, doctor chasing is a big one just  because it just, sometimes the first doctor doesn't necessarily work perfectly. If you're going to, so many years  of doctors about the same issue, don't keep going for one, just so you get the answer you want. At some point,  there's going to be a bit of give and take to have to go both ways, but definitely do your research, make sure  you're using credible resources. And it's all about walking that line. I would definitely say, make sure before you  go in again, do your research, but also think about specifically what you want to say. It's a lot easier to,  especially if you end up having to push back against the pushback it's a lot easier when you go in and from the  get-go what you want to talk about this also, I did this with my mom when I was in minor and going to all these  appointments is we'd sit down, we'd write out symptoms.  

11:31 

Aidan Leslie 

What we had tried dates that I'd taken things, dates, things that happen, all that thing, just to kind of get all of  that figured out before went in. Cause it was a lot easier when you go in having all of that. Even if it's written  out, I had a binder like a three inch binder full of all my medical files when I was really going through it. I  would say definitely do research, do your credible research and think about what you want to say before you go  in.  

11:58 

Linda Bluestein 

Those are all great tips. Has advocating for yourself come naturally to you or did you have to build it up like a  muscle?  

12:05 

Aidan Leslie 

Oh no, it did not come naturally to me at all. I'm a very shy person with a tremendous amount of social anxiety.  If you meet me in the wild, I was not one of those people that walked into a doctor's office and just started  chatting and having a great time. I was very quiet. Actually having to use my voice quite literally, and also  figuratively and say, no, can we look at this again? Can we try something else? Did not come easy to me. It was  definitely something I had to build up. And it did. I like to think it got easier. The more I go on. Because once  you do that, especially after I had my gastro-paresis test and it came back positive, that was really a great boost  for the future to keep saying, okay, I was right. Okay. And it didn't work every time.  

12:59 

Aidan Leslie 

Like there's some times that you go in and you say, Hey, can we look at this? They're like, no, that's not that it's  sometimes it's not right. Just having that, once you get over that initial hurdle and it works, it gives you a great  boost to continue doing that in the future. 

13:15 

Jen Milner 

That's so true. You mentioned earlier that it's important to do your research right before you go into medical  appointment, it's important to gather your information and have it all in one spot. Are there any other kind of  bits of practical advice that you would give to someone trying to get ready for a medical appointment?  

13:40 

Aidan Leslie 

Just as much as you're doing your research your own body. If that makes sense, keep track of as much as you  can. If you're going. I know I I've had to do a lot of appointments about headaches. If you go in and you keep a  headache diary, it's a lot easier for doctors to visually see it. I think it just helps in that communication process.  If you can keep track of your symptoms in a diary or a log. I remember I went through a phase where I had a  bullet journal and I made it all cute. It was pink and sparkly and had flowers on it because sometimes you need  to just take your very clinical looking headache diary and make it personal and fun. It's not just drab pain all the  time. As much as you're researching, what could be happening, make sure that you are researching as well.  

14:27 

Aidan Leslie 

What is happening right now? I think that's a really great tip to help again, aid in that communication between  doctors and patients.  

14:34 

Jen Milner 

I love that. That's great. Thank you. So Dr. Bluestein, as someone who is on the other side of the table in those  appointments, so to speak, does Aidan's experience sounds typical for someone with chronic illness?  

14:47 

Linda Bluestein 

What it is describing is very typical for someone with condition like EDS, Ehlers Danlos syndrome is a very  multi-systemic condition. For most physicians, they have not only no idea what it's like to live in an EDS body,  but they can't even really wrap their brains around it. It's just so hard to fathom how so many different things  could be going on that. I, and I sometimes draw this out as a graph for people that, if you're experiencing this  many symptoms up here and your doctor has never experienced more than this, that's like a huge gap to try to  fill. It's extremely common for people that are dealing with such complex conditions. Aidan described it very  well, that, for a lot of these things, you can't measure them. Well, a lot of the imaging studies are going to come  back normal. The labs are going to come back normal.  

15:47 

Linda Bluestein 

Sometimes the doctors misinterpret the fact that you're almost disappointed when they come back normal. And,  and I've been there, I'm on both sides of the prescription pad, if you will, and the stethoscope or any other  analogy you want to use, because I also have EDS. I definitely understand also about the test is normal and  you're like kind of disappointed because you were hoping for an explanation, right? Sometimes that can almost  turn off the healthcare professional because they almost think that you want to be sick when really you don't,  you just want to know why you don't feel well. 

16:24 

Aidan Leslie 

That does make sense. I have definitely been on that side and I think it's very great explanation. As you were  talking about how I've seen that switch of when you look terrified and look terribly scared that there's nothing  wrong. They think that you're searching for something to be wrong when really you're just searching for a way  to get better. I think that's a great thing to point out. Thank you. What advice would you offer people to help  prepare for those medical appointments?  

16:56 

Linda Bluestein 

As Aidan described, preparation is so extremely important. I recommend that people first start out by thinking  about their goals. What is it that they want to get out of this next appointment and try not to bring previous  appointments into that next appointment with you, try to start with a clean slate, especially if it's a new provider that you're seeing for the first time. Maybe it's a neurologist and you've already seen a couple of them if  possible, try to give this person a fair chance because sometimes people come in to appointments with, a bit of a  preconceived notion about how things are going to go. That is not going to be helpful for them. Try to have an  open mind, like in said, you definitely can benefit from rehearsing with a family member and having that person  really help you define what it is that you want to present in terms of the information.  

17:54 

Linda Bluestein 

Because sometimes when you're in that setting, you either, forget what to say or you kind of you're intimidated  and you, so you don't say what you wanted to say. It helps if possible to have the same person that helps you  prepare to have them go with you to the appointment so that they can, kind of nudge you and say, Hey,  remember you wanted to talk about blah. I think that can be very helpful. Especially with teenagers and I see a  lot of teenage patients, females in particular who, it's hard enough going through those teenage years without  having chronic illness, but add chronic illness on top of it. I think especially as ballet dancers that, we're used to  being compliant, we're used to, we're told to do certain things and we go along, we tend to be perfectionistic.  Things start to go, not perfectly with our bodies, sometimes we can blame ourselves and it can be very  frustrating.  

18:52 

Linda Bluestein 

Having somebody who can really help give us that confidence, I think can be very important and really help us  to get what we need out of that appointment. Make sure that you prepare, plan, you set out your goals. Also, you  would be shocked at how many people, even who see me for appointments who have not filled out their forms  for example, or have not done their medication reconciliation. I'm in the middle of an appointment and I'm  preparing to write them a prescription. I say, I see you're on these medications. Well, no, that's not what I'm  taking and that's not the right dose. And they filled it out. They put it all in there. Make sure that all of that is as  accurate as possible because that will help make the appointment more efficient. I know, again, from being on  the other side, it can feel like so much homework and it can feel like, oh, why do I have to do all this, fill out  this paperwork.  

19:50 

Linda Bluestein 

I know when I went to my first pain clinic appointment, which was hard enough in the first place, but answering  those questions, they seemed like, well, what, why does all of this matter? But it really does. We, we, these are  things that we really need to know in order to develop a good plan. Take all of that seriously, make sure that the  medications are, complete up to date. If you're on any supplements that's complete and up-to-date because then  you will be able to not only get more out of the appointment, but it also builds credibility with the healthcare  professional. If they see that you are taking this seriously and that you have done all of that homework on the  front end, then I think that really sets the stage for them to understand that you are somebody who really does  want to get better.  

20:36 

Aidan Leslie 

That's a fantastic point. I definitely think about credibility a lot. It's a very important part on the patient side,  because I think if you're someone who goes in every other week that says, hey, my great grandma said, I have  this, but you do no other homework. You don't have any forms for that. Anything. I think it's a lot harder to get  taken seriously. I think it makes it harder for the rest of us who are doing their homework to it, to get taken  seriously. I think it's like you said, it's very important to build that credibility, to do your homework and go in.  Because I think it sets you off on a better foot for all your patients.  

21:13 

Jen Milner 

Oh, that's a great point. We expect when we're going into to see a doctor, we're thinking we're paying them. We  expect them to do all of the work, right? We are going to them for answers, but the doctors have this very  narrow amount of time to be able to see you. None of them are going in going, how can I just waste the 10  minutes that I'm going to see them until I can get out of the room and go onto something else. They want to get  the most out of that time with you as well, because they want to have the most efficient meeting possible so that  they can get you the best answer, the best feedback, right? Doing your homework while I hate sitting in filling  out those 20 pages, it is helpful. It is helpful to get it done in advance so that you don't show up and have to fill  it out at the time in which you should be back in the room with the doctor, right? 

22:00 

Jen Milner 

Those little things can make a huge difference. I imagine to the doctor, to their schedule and to their huh, this  person is organized. They have brought in their pain journal. They have brought in an updated list of meds. Let  me see. What I can do for them from here would be my thought.  

22:16 

Linda Bluestein 

Aidan raised an excellent point that I wanted to jump off real quick. Let me see if I can remember this exactly  the way you said it, but just in the same way that patients may prejudge based on other experiences with other  physicians, we may prejudge based on other experiences with other patients. It's, it's, I'm not saying that it's fair  cause it's not, but we're all human beings. We all see things from our own perspective, right? And we're all  shaped by our experiences. If you go in and you demonstrate that you are prepared and that you are willing to do  the work, because that is one thing I can say almost with a hundred percent certainty, there's no magic cure for  EDS or any of the associated conditions. They all require a lot of work. These are lifelong things that require  constant care of the body.  

23:12 

Linda Bluestein 

You don't want to be dragging along your doctor. Your doctor doesn't want to be dragging you along. You want  to be walking hand in hand together through this journey and you want to be demonstrating to each other that,  you are wanting to be on a team together.  

23:33 

Jen Milner 

That is great. Thank you. So let's talk about being proactive, Dr. Bluestein. What can, what can we do in that  meeting to try to be proactive? We've done our homework. We filled out our forms. We brought in our pain  journal. There anything else that we can do?  

23:52 

Linda Bluestein 

It's, when we go through medical school, we spend a lot of time learning how to extract information from people  and what to focus on. It's understandable that as appointments have gotten shorter and shorter, that it's hard for  patients to necessarily know what they should focus on. That's where, as Aidan mentioned about the three ring  binder, that's, it's helpful to keep that three ring binder or the headache journal or any of those kinds of things.  At the same time, have what I call a one sheet page with, the most pertinent things that you're constantly  updating. You're constantly dropping off other things as more important things come into play. It's kind of  unfair to expect patients to do this, but it's the reality of the situation that we're in. We are in an environment of  extremely dysfunctional healthcare and unfortunately, people with conditions like EDS and other hyper-mobility  disorders and connective tissue disorders are, we are at the shortest end of the stick because these conditions are,  as you said, mostly invisible they're multi-systemic, it is very hard for most physicians to understand what it  must be like to be walking around in a body that works like this, because if they haven't experienced it's like, I  have no idea what to, how to relate to this.  

25:25 

Linda Bluestein 

It's the exact opposite of going into an appointment with a fractured arm where the bone is sticking out, and  everyone can see what that is and relate to it. They can feel that, oh my gosh, if that was my broken arm, they  just, it's just really hard for most providers to relate to this. Whenever possible, focus on more specific  symptoms rather than less specific ones, try to really think through what your symptoms are so that you can be  consistent with your story, because that's the other thing is that people sometimes will in the process of telling  their story, they'll tell it differently the second time, and then a little differently the third time. Especially if  you're at a teaching institution, the intern has taken your history, then maybe a resident and then a staff comes in  and now you tell different story and everyone's looking at everyone else, like, what just happened here?  

26:21 

Linda Bluestein 

When really it's more a matter of you really kind of thinking ahead what the answers are. It may not really  matter if you get palpitations four times a day or five times a day, that doesn't make a difference, right? You just want to stay consistent when you can, more specific is often more valuable than less specific. And remember  that we're looking for patterns. We are trying to play detective with the limited amount of time that we usually  have available to us. We're trying to put together the information that you're giving us and put us, put it together  into a, into something that fits with a diagnostic category. That would make the most sense. With Aidan's  example of gastro-paresis, depending on how familiar that doctor is with gastro-paresis or when they last read  about it, I love what she said about bringing in an article.  

27:13 

Linda Bluestein 

That's much better than saying someone on Facebook. Even if it's true, that it doesn't matter if it's true, it's much  better to look for an open access journal article, print it, make it easy, make it as easy as possible for them print  it, highlight like where, just a couple of lines, keep it super simple and straightforward. That will those kinds of  

things I believe will make it much more likely that you can connect with your doctor in a way that they then  become your ally rather than seeing you as I don't know how, I don't know what to do with this person.  

27:52 

Jen Milner 

Yeah. And that's a great point. I love what you said about the one sheet. I think that's a really valuable piece of  advice so that we're always trying to keep our medical information current and sure. Aidan has gastro-paresis,  but if that's not the issue right now, she's going to want her one sheet to reflect what are the current issues and  

why is she going back to see that doctor and what you mentioned about, Aidan's story with gastro-paresis again,  it's a great point because if her doctor doesn't see a lot of people with gastro-paresis, as you said, the point of  view that they're coming from, what they're used to, what they're working with is going to influence what they're  looking at and what they're seeing. For us, for the population we work with artistic athletes, we have a very  slender dancer going in to see a doctor, and she's like, I've lost all this weight.  

28:44 

Jen Milner 

The doctor's like eating disorder, feeding tube. Like that may be just what he sees more of. That may be where  his first thought went. And, and that's just the story that he is used to working with. It was great that she was  able to come in, as you said, highlights, highlight those articles, find those few little things that you can say here.  This is what I want you to be able to look at and talk about. Aidan talked about how she's been going through  this since she was a teenager, since she was a minor from your point of view, Dr. Bluestein, is there advice that  you would give teen patients specifically?  

29:19 

Linda Bluestein 

I really think it's important for teen patients to learn how to advocate for themselves, especially when their  parent is still involved in their healthcare. But, it's important to really start to learn how to, speak on your own  behalf. I really like it when I hear from both the teen patient and the parent. If I hear everything from the parent  and the teen never says a word, it is not as good. It's really nice to be able to hear from both of them. I want to  hear, I do want to hear from the parents too. I definitely want to hear from the parents too, but I want to hear  from the teen and especially as they're getting to be, 19, 20, I mean, I, I do have some patients like that where  the parent is still really directing the care. I understand that in some cases, if the symptoms are bad enough and  the person is really struggling that maybe the parent does still need to be in charge of the care, that there are  challenges there that sometimes cannot be rectified differently, but whenever possible, I think it's important to  learn, to speak up for yourself and be able to be really actively involved, even when you're a minor.  

30:32 

Jen Milner 

Aidan, does that bring it all with you resonate with you?  

30:35 

Aidan Leslie 

Absolutely. I think when you're younger, it's very important to start speaking up and trying to, and it's terrifying,  especially as me, when I was very shy and introverted, when I was growing up is terrifying, but it gets easier.  Once you start doing it and you start seeing the benefit of actually connecting with the doctor, instead of just  letting your parents do it for you, it starts to get even easier. Definitely start, but also, like I was saying before,  where I talked it over with my mom before every appointment, that was really nice because sometimes it's not  intentional. I just genuinely forget to bring something up and my mom would be like, oh, Hey, you wanted to talk about this. She would jump in, or she might chime on to things that I hadn't really noticed, but she had  noticed as an outside perspective watching me.  

31:20 

Aidan Leslie 

I think it's very important for both to have a voice and to use it as much as they can.  

31:27 

Jen Milner 

Absolutely. So, Dr. Bluestein, we've talked about both sides being prepared, both sides, walking into the room,  ready to work together, ready to walk hand into the sunset, all in this, in these ideal scenarios. Right. If people  do feel unseen or unheard by their doctor, what do you suggest they do?  

31:50 

Linda Bluestein 

I think if you can really think about what, if you could get just one thing out of the appointment, what is it that  you would really like to get out of there? If you feel like you're really just having difficulty connecting with the  doctor, then, you want to try to connect with them on a human level. And, and I've been in appointments with  family members where I literally could feel and see the switch happen in the doctor where they went from, like  they came rushing in and they were, like you could almost feel the frustration, and they're sitting at the computer  and they're doing all of it. Something happened where the switch flipped. They started to see my family member  as a person. They started to really get that this is somebody who is struggling and who just wants their help and  needs their help. I think that really working on building that connection in whatever way, and sometimes it  takes, using certain words like you could even ask the doctor a question, have you ever had the flu?  

33:07 

Linda Bluestein 

If they say yes, say, think about how you felt on that worst day of the flu. Before I became chronically ill, I had  the flu and it feels to me like I have the flu every single day. I know that this may sound crazy to you because of  X, Y, and Z, but it's, this is how I feel. I am willing to do the work. I understand that, you may not be able to  cure or fix my problem, but I at least need to feel like you heard what I said and that I was taken seriously. That  if there are any possible ways that we can evaluate this further, that we are doing those, taking those steps.  

33:51 

Aidan Leslie 

I'd love to tackle that from the patient side. Because I definitely think you had some really great points there.  I've, I've bought my I've myself, been in appointments where you see that switch. I, I can either, you can really,  you can tell part of the way through the appointment, whether you're kind of on shaky branches or if it's really  great. I've been in both types of appointments where you're on shaky branches and you fight for it and you make  that connection and it turns around, but I've also been in those appointments where you fight for it and it just  does not keep, it does not go well. I think it's so important to have almost like a filter in your mind where if  you're in those appointments, that you know that this is just not working, because sometimes you get a doctor  and just doesn't click.  

34:34 

Aidan Leslie 

I think it's very important to have a filter and to step back from the chaos that is doctor's appointments in  general. To say, look at it objectively and say, does this apply to me? Does it, does this even work for like, does  this fit for me? Does this apply? Does this benefit me and make sure you're looking at it objectively because  sometimes it's, you may not really connect with the doctor, but they're saying something that will benefit you,  but you don't want to do it. I've been in that boat where it's something that you, I I've been told you need to  exercise for one hour every day and you need to schedule your day really strictly. You need to make sure you're  doing this every day and you need to make sure that you're not doing this and ever being like, hi, this is so much  like, I'm overwhelmed just thinking about this.  

35:22 

Aidan Leslie 

I talked it over with my mom and I stepped back and I thought, this isn't in reality. It's not that much work. It's  just sit down, figure it out and try it for a little while. I did, and it ended up really helping at the same time. I've  also doctor's appointments where they say something and I look at the filter and I'm like, yeah, no, this doesn't work for me. This does it. Some of the things it's like, oh, you will never do X, Y, and Z again. You look at it  and you're like objectively, no, that’s not me. And you just let that go. There are sometimes still parts of the  appointments that you look at and you think, okay, I'm going to keep this and let this go. I think that filter is  really an important part of working with doctors and whether it's good or bad.  

36:05 

Aidan Leslie 

I think it's important part of it.  

36:09 

Linda Bluestein 

Yeah. I think that's Aidan. I, I like what you're saying, because at the end of the day, it's your body. I think that  the mistake that a lot of us make and I've made this mistake. If the doctor doesn't validate what we're feeling,  then we start doubting ourselves and re rather than saying, they're not appreciating what I'm saying. They're not,  maybe they may or may not believe me. They may or may not express that they believe me, but I, at least I  suspect that they don't believe me. Now I'm not even believing myself, which it's much more harmful to stop  believing yourself than to say, well, this doctor didn't believe me. And I may or may not. That may or may not  influence whether or not I returned to this person for care, or, try to find someone that does believe me. At the  end of the day, it's much more important to believe in yourself.  

37:05 

Jen Milner 

That is really wise words. I'm glad you said that. I think it's such a fine line of, I respect this doctor and I chose  them because I have read great things about them. I want to go in and get their information. As Aidan said,  whether I want to hear it or not, it might be something that I need to hear, but being able to have that filter that  helps you say, wait a minute, this is making me doubt myself. Or Nope, this person is saying I should stop  walking because walking tires me out. I should just get in a wheelchair the rest of my life. Nope. That doesn't fit  either. Really knowing yourself and having that objectivity of being able to step back because you're right.  When we start doubting ourselves, especially with chronic illness, when we start doubting ourselves and  doubting, when you go to the ER and say, my headache is a nine and they're like, no, it's not.  

37:56 

Jen Milner 

Because if it was a nine, you wouldn't be able to talk. You're like, I'm pretty sure it's so not having that doubt  about yourself is so important for all of this. Aidan, if there is one thing that you want people to take away from  this conversation, what would that be? I know it's asking you to distill a lot.  

38:18 

Aidan Leslie 

So much. Just so little, it's such an important topic. I would probably say that the most important thing is to, it's  going to be half and half. I'm going to make it to respect is so important. The doctor, but also respect yourself  and respect your right to feel better and to try and feel better, but also to use that filter, to make sure that you're  not just throwing things out or taking things that don't apply to you, but really using those filters and really  building them up over time. You're confident in them and respecting yourself.  

38:58 

Jen Milner 

Nice and Dr. Bluestein. I would ask you the same question.  

39:01 

Linda Bluestein 

I'm going to take Aidan's halves and maybe divide it into thirds.  

39:06 

Jen Milner 

Come on guys. Come on.  

39:10 

Linda Bluestein 

So, so the first thing is don't take it personally. I think oftentimes we, and again, I know I do this, again with the self-doubt and oh, this person doesn't like me, or believe me, or whatever, it's probably more a reflection of  what's going on with them. That physician may be, they may have a sick child at home that day. They may be  having difficulties with their employer or the insurance companies with all the crazy regulations and things that  they have control over. Just because things didn't go well doesn't mean that you did anything wrong. So, and in  the same vein, there are so many things that you can do to help try to make the experience more positive and  more beneficial for you. And, and so for that reason, I also have been working on a course for this. If anyone is  interested in signing up for that, if they go to my website, there'll be more information about that because it is so  important.  

40:10 

Linda Bluestein 

This is a skill that I don't think we needed back when Marcus Welby, would come in is probably too young to  know who Marcus Welby is. When Marcus Welby would come to your house and all they had was a  stethoscope and, a blood pressure cuff and some very astute skills, nowadays the healthcare system is so  complex. I think because our testing has become so much more advanced, we rely on that too heavily. We rely  on the testing. The testing comes back negative, I think so often we don't believe the patient when that's  absolutely not how it should because the testing should just be one small piece of the puzzle. At the end of the  day, don't take it personally, know that this is something that you definitely though can work on as a way of  improving your access to care. That is a person who's chronically ill.  

41:02 

Linda Bluestein 

It's, it's even harder because healthcare now is difficult for anyone to navigate, but especially if you're  chronically ill.  

41:08 

Jen Milner 

Yes, I totally agree with you. I think this has been such an important conversation for us to have. I feel like there  is a cornucopia of information that has come out of this conversation. We are so lucky to have both Aidan Leslie  bringing her point of view to this and sharing her journey and also to have Dr. Bluestein who is able to address it  from the other side of the table. We're, we've been able to have a really great conversation from both sides of the  table when both sides really want this to work. Both sides are really trying to bring everything to the table and  

both sides are trying to make it work as well. It's been really valuable to hear both of you talk about what  happens when the person on the other side of the table, for me, isn't necessarily all that I had hoped they would  be.  

41:56 

Jen Milner 

The things that you can do from your point of view to try to move it forward. So, Aidan, thank you so much for  taking the time to come on and chat with us today and to share your experiences with us and Dr. Bluestein for  being able to chime in with your experiences as well. We are grateful that you guys have been able to give us  such a lot to think about and some really actionable steps to take with us into our next appointments. Thank you.  So having me. Yes. Thank you. Thank you for being here. Thank you for always being willing to speak up in  bendy bodies. You're such a great ambassador and a great example of how to live really incredibly well with a  chronic illness. We love having you part of the bendy bodies team.  

42:41 

Linda Bluestein 

Yes, absolutely.  

42:44 

Jen Milner 

Until then, this is Jennifer Millner and from Dr. Linda Bluestein and myself, thank you very much for listening  to bendy bodies and we will see you next time.  

42:54 

Linda Bluestein 

Thank you for joining us for this episode of bendy bodies, with the hypermobility MD, where we explore the  intersection of health and hypermobility for dancers and other aesthetic athletes. If you found this information  valuable, please share it with a colleague or friend and leave us a review on your favorite podcast player. Remember to subscribe so you won't miss future episodes. If you want to follow us on Instagram, it's at bendy  underscore bodies and our website is www.bendybodies.org. If you want to follow Bendy bodies, founder, and  co-host Dr. Bluestone on Instagram, it's at hypermobility MD, all one word and her website is  www.hypermobilitymd.com. If you want to follow co-host Jennifer Milner on Instagram, it's at Jennifer.milner  And her website is www.jenniferhyphenmilner.com. Thank you for helping us spread the word about  hypermobility and associated conditions. We want to hear from you.  

43:58 

Linda Bluestein 

Please email us at info@bendybodies.org to share feedback. The thoughts and opinions expressed on this  podcast are solely of the cohost and their guests. They do not necessarily represent the views and opinions of  any organization. The thoughts and opinions do not constitute medical advice and should not be used in any  legal capacity whatsoever. This information is not intended to diagnose, treat, cure, or prevent any disease as  this information is for quality educational purposes only, and is not a substitute for medical advice, diagnosis or  treatment. Please refer to your local qualified health practitioner for all medical concerns. We'll catch you next  time on the bendy bodies podcast.